30 Responses to “Special Needs Discussion – Circulatory and pulmonary issues (including heart and blood conditions)”

1. lizzyf1 Says:
   March 15th, 2011 at 6:49 am

   we adopted our daughter when she was 2 1/2 years old (She is now 5 1/2). She was special needs and had CHD-VSD. A ventricular septal defect (VSD) is a heart malformation present at birth. Any condition that is present at birth can also be termed a “congenital” condition. A VSD, therefore, is a type of congenital heart disease (CHD). The heart with a VSD has a hole in the wall (the septum) between its two lower chambers (the ventricles).

   She had surgery when she was 1 1/2 years old in China. We brought her to a cardiologist when we got home and they said whatever they did….it worked! Her heart is fine now and we don’t have to have any special precautions.

   Thankfully her special needs hasn’t been an issue whatsoever for us. She has a lovely scar down her chest but other than that….no ill effects.

2. frteach Says:
   March 15th, 2011 at 8:01 am

   We adopted DD at 2.5 yrs old. Her SN was listed as hemolytic anemia. This means that she destroys her blood cells in her body (not that she doesn’t make enough, which is a different kind of anemia). We prepared ourselves for the worst case scenario, even though her file said she was pretty healthy.
   Her SWI never told us she was transfusion dependant. Strike one. They also never told us she was on steroids, because they thought her anemia was auto-immune in nature. Strike two.
   Once we got her home and to a hematologist, we learned that her anemia was not auto-immune in nature and that she had been on steroids for more than two years unnecessarily. We learned she had spherocytosis, a cell membrane disorder. This is very common in Northern European countries, but very rare in the Asian population. Basically, her blood cells are the wrong shape so they get trapped in her spleen and broken down prematurely. Many people have this condition and do not even know it, as there can be quite a range in severity.
   DD’s case was quickly labeled severe as she needed blood every 8 weeks or so. She could not maintain anywhere near a normal range for red blood cells on her own. She was not growing well and they feared without action there would be some permanant consequences on her development.
   We therefore chose to have her undergo a partial splenectomy. A very skilled surgeon removed 80% of her very enlarged spleen. This slowed down her rate of red cell destruction and gave her more normal counts. It is a very risky operation, due to the spleen having so many blood vessels. Luckily, we had a fantastic surgeon and all went well.
   At the one year mark from surgery, DD has been holding normal red cell counts on her own and has grown a phenomenal amount in a year (like 5+ inches). Her body literally could not grow and make blood cells so it chose to make cells. Now that it doesn’t have to work quite so hard, she has energy to devote to other things.
   This special need, even when at its most severe, was very manageable for us. Transfusions take a LONG time to give. Most times we would end up spending 6 or more hours at the hospital on those days. That is the biggest thing to be aware of. There is also the fear factor. DD never was very symptomatic of being anemic, so we spent a lot of time guessing and worrying at first. Once we learned her pattern (every 8 weeks) we became more secure and felt better about the whole process.
   There are some viruses that can shut down red cell production in hemolytic anemia kids. The most common is parvo B19, which is also called Fifths disease. DD caught this in February of this year and went into an anemic crisis. Her blood counts were dangerously low. Luckily, our fantastic hospital took good care of us at 5pm on a Friday evening during a snow storm and gave her a much needed transfusion. She is now fine and since you only catch parvo once, we now have this behind us.
   We are also very lucky to live near a fantastic hospital with a wonderful hematology team. We can call any time, day or night, and speak to the hematologist on call. Unfortunately, we have ad to use that service more than once. It’s is such a relief to know that you can talk to the right doctor on a Sunday morning! Not every hospital is going to have that though.
   This SN was a good fit for us as we are also not squeamish about blood or needles. This is not a good SN if you cannot stand the sight of blood or if needles make you faint. We have had to help hold DD during blood tests and IV insertions, which is not easy.
   All in all, we would totaly adopt another child with this SN, even in its severe form. It has been very manageable for us and on a day to day basis is quite easy as we have nothing to do. Even before surgery, all we could do was monitor her.

3. petnjay Says:
   March 15th, 2011 at 8:15 am

   Single Ventricle Defect, Heterotaxy, PDA, TGA, DORV, Pulmonary Stenosis

   We adopted our daughter with the above heart conditions at 22 months old in January 2009. She had had no surgery in China. With Single Ventricle defect, a child always runs the risk of having high pulmonary pressures which can prevent her from being a candidate for surgery. I was told that without the surgery these children have about a 15% chance of living to the age of five. Open heart surgery for this condition requires two parts, a Glenn procedure and a Fontan procedure. The Glenn is usually done shortly after a child is born, around 6 months old. The heart and body are given time to get used to the new physiology after surgery and then the child has the second stage, the Fontan, at around 18 months to 2 years old.

   Many of the children who have this condition in China do not get the Glenn done as infants, and therefore have low oxygen levels (our daughter’s was 62%, but I’ve heard of much worse) and they need surgery immediately after coming home. I know of many cases in which the child had both procedures done at one time, both the Glenn and the Fontan. This is quite risky, but if the child is a candidate for surgery, having it done far outweighs the risk of not doing it immediately. The surgery is very expensive, and adoptive parents should make sure their health insurance coverage will make this feasible. Expect the costs to run around $500,000. Typical hospital stay is about 2 weeks. Our daughter had complications and was in the hospital for about 2 months.

   There is no cure for single ventricle defect. The surgery is palliative, and presently the life expectancy of these children is 30s to 40s. There are also complications that can arise from the re-routed circulatory system. Protein Losing Enteropathy, possible learning disabilities (from low oxygen levels prior to surgery, and from the surgical procedure itself as the heart must be stopped and circulation ceased for some time during the operation), and liver complications are some of the more common ones seen in Fontan patients. Also, leaking tricuspid valves are normal, and I have been told that the valve cannot be repaired without a heart transplant due to the position of the valve. Because of the potential complications involving the liver, single ventricle patients are not usually able to get on lists for heart/lung transplants.

   As for follow-up after surgery, our daughter was on several meds and had to see the cardiologist frequently right after surgery for about 3 months, then it became monthly, and after the 6 month point, she just goes in twice a year for an echocardiogram and an ekg. She is on aspirin therapy now. We cannot get life insurance for her, and I do not know of any single ventricle child that has been insured (life, not health, insurance). Other than her bluish lips when she gets cold, we really do not even think of her heart condition on a daily basis. We keep her away from situations where she could catch respiratory illnesses, and we make sure she’s vaccinated for flu every year. She gets a cold now and then, but is healthy and strong enough to get through it. She cannot take decongestants, but any other meds safe for someone with pulmonary hypertension are acceptable.

   Our daughter will turn 4 next week and is doing very well. She is energetic and active; she loves to swim, ride her bike, play on the swings, and do everything else a typical 4-year old does. She is starting to read and really does great with numbers and patterns. We have seen no learning disabilities at this time. We are overjoyed to have her in our lives for as long as she is given to us. We would not trade her for an “easier” special need, and we know that each day is a gift.

4. mallmarie Says:
   March 15th, 2011 at 8:21 am

   In October 2000, I adopted a ten-year-old girl with a ventricular septal defect which had been corrected by surgery at the Anhui Red Cross Hospital when she was three years old. Other than a three inch scar on her chest and a visit to a cardiologist ever two years, I would not even consider this a special needs adoption. She has no restriction of activity and is in perfect physical health.

   In regard to adopting a ten-year-old, the emotional issues were far more significant than the physical. We had a VERY long honeymoon period – everything was quite good for at least four years. After that, we had a tumultuous teen spell. She has some pretty significant attachment issues, and really did not understand her role in a family, or how to live in a family. She is now almost 21 and doing well – living with her boyfriend in Minneapolis (we live in Connecticut) and working full time, not going to school.

   Obviously the school issues surrounding older child adoption are of much concern. But the biggest recommendation I can give anyone considering a child over seven is this: do NOT adopt out of birth order!!!!!! When my daughter came home at age 10, I also had a four-year-old from China who accompanied me on the trip. Sibling rivalry was a huge thing on the part of the older one – she had been lead to believe that she would be the pampered only child of a wealthy American family (LOL!) and did not take kindly at all to having an adorable younger sister.

   I know other families who have adopted school-age children who had older bio kids in the family (or are “only” children) and they are doing beautifully. These older children deserve to be…NEED to be….the baby of the family. They have never been babied or pampered or cuddled, and this is an important thing for their emotional health. My daughter arrived here and was expected immediately to be the big girl in the family, the big sister. It was not good for her, nor for her younger sister.

5. PETERK Says:
   March 15th, 2011 at 8:33 am

   Good Morning everyone,Me and my wife adopted our daughter at 2 1/2 years old with VSD also.(she is now 4).Our circumstances sound just like lizzyf1.The cardiologist we brought her to in Boston said they did a great job in China repairing her heart and she has no problems with it. There are no restrictions placed on her. She also has a long scar down her chest,but that can be fixed later.Honestly,I can say we were worried when we said yes to taking her because we only had ( officially 48 hours ) to decide but they gave us some extra days,and the medical records the agency got on her were not very detailed for the Doctor to review them and make an informed decision. We finally said yes to her and to this day you would never know she had a problem with her heart.She is thriving and growing tall and strong being home with us now for 19 months. I am so happy we chose her off the 48 hour list and for all the extra work our agency did for us. I can say there are no physical problems to deal with. She may be a little behind in speech,but that is coming along well.

6. adw531 Says:
   March 15th, 2011 at 8:36 am

   We adopted our daughter at 19 months (Jan 2008). She had VSD. Once home, we visited the cardiologist twice. Her VSD completely healed on its own and the cardiologist reeased her from his care. She is 4 1/2 and an amazing girl. She has more energy than our other 2 daughters combined.

   Our take on SN adoption is that you never know what the SN will be. Her VSD put her on the SN list but it’s only taken about 2 hours of our lives total to deal with. The real “SN” for us has been her eczema. She has severe eczema and has been to countless specialists for that. After allergy tests of every kind and 2 years of trying various treatments, we finally narrowed the cause down to stress. She had some attachment difficulties and sleeping was hard for her. We have to follow a very strict bedtime routine for her. If we don’t, anxiety sets in and the eczema breaks out. We have a specific skin routine for her every day and have to be careful about what products we buy.

   It’s just a reminder to me that no child comes with guarantees.

7. TrulyBlessed Says:
   March 15th, 2011 at 9:09 am

   Our daughter was identified with a VSD at 8 months of age and put on the SN list due to a 5mm hole in her heart. When we met her at just over 19 months old and brought her home to see her cardiologist, a chest x-ray showed that her heart was the right size for her body and a sedated echocardiogram showed a 9mm hole instead. Fortunately, though, her blood pressure was where it needed to be in both ventricles and because we had reported no concerning behaviors (such as lips and fingertips turning blue, shortness of breath while eating or playing, squatting behaviors) and the cardiologist made the decision to hold off on surgery and see if the hole would close on it’s own. At 3 1/2 years old, with no surgery and no medications whatsoever, the hole was pronounced closed and she will only need one further cardiology appointment next summer.

   However, as we found out when we met her, her CHD was only one of her “special needs” (and turned out to be the “easiest” to overcome) — as I said, she was 19 months old when we met her, but was really more like a floppy 8 month old. She couldn’t sit on her own, we had to prop pillows around her to keep her upright. She had zero strength in her legs and could barely support herself while holding on to our fingers. She knew the mechanics of walking, but it would take her another three months of exercise and proper nutrition for her to be strong enough to walk on her own. She never crawled. Our daughter had been left in a crib for 19 months, her skull flattened from lying on her back. Her teeth were brown and broken and her gums were severely infected and bleeding. She had never had anything but a bottle for nutrition. Her legs had been tied to the crib and to this day she has grooves around her ankles where the restraints had been tied (for years she had dark purple discoloration around her ankles, but those marks have faded over time). In short, she was very developmentally delayed and is finally catching up to her peers. She is now 4 1/2 and very small for her age (especially compared to American children — she is easily 4″ – 8″ shorter than all of her classmates in preschool. Because of her rough beginnings, we will enroll her in preschool for another year so that when she starts Kindergarten she will be nearly 6 years old.

8. nicole1117 Says:
   March 15th, 2011 at 9:13 am

   Thalassemia – We adopted our son Aaron at age 3 (last April 2010). He has beta thalassemia major, also called Cooley’s Anemia. (In China this may be called thalassemia, b thalassemia, thalassanemia, or Mediterranean Anemia. The term they use seems to have no connection to the severity of the condition. ) Before I explain his form of thalassemia, I want to let people know that I was very, very worried that this condition would dictate our lives/overwhelm us. It does not. For basically 29 days each month we have a typical 4 year old child, and then the next day we go to the hospital for 4-5 hours for a transfusion and then back to typical life. It is just part of his life. Thalassemia is not a condition in which it is life threatening on any given day, as could be the case with diabetes, asthma, or peanut allergy. It’s not like that; instead it’s about making the best decisions and making sure we are compliant with his treatment schedule so that he will be able to live the longest and healthiest life possible. We have found this condition to be very, very manageable for us.
   With my son’s form of thalassemia, (which is the most severe), his bone marrow cannot make healthy/functional red blood cells, so he lacks hemoglobin, which carries oxygen through one’s body. He survives by receiving a transfusion of red blood cells every 3 or 4 weeks (depending on how quickly his hemoglobin drops). The transfusions supress his bone marrow from attempting to produce the defective cells. Each transfusion brings iron into his body, which the body has no way to get rid of. He must take a daily chelation medication (called Exjade, a pill which must be dissolved in juice or water) to help his body get rid of the excess iron. The main cause of death related to thalassemia has been cardiac arrest/heart attack due to iron depositing in the heart, and life expectancy USED to be around 20 years of age. With compliance with daily chelation medication, the goal is to keep the iron out of the organs. With the use of Exjade (came out around 2005), the belief by doctors is that life expectancy should be comparable to any other person without thalassemia. However, since it is a new medication and current thalassemia patients have not been on it for too long, the data is not in yet. However, there are people living into their 40s and 50s with thalassemia, and they did not have access to Exjade (they used an infusion pump system with a medication called desferal). We take our son once a year for a special MRI to determine the amount of iron in his liver (first organ to collect iron) and that is what the dosage of his chelation medication is based on.
   Some of the things to really consider if you are thinking about adopting a child with thalassemia:
   - how close are you to a hospital? We live 20 min from one and that works great for us. You would be going every 3-4 weeks for about 5 hours.
   - can you take time off from work to take your child for a transfusion every 3-4 weeks?
   - Do you have adequate health insurance, or is there a program in your state such as Children With Special Health Needs that you could access?
   - Can you bring your child to one of the 9 thalassemia treatment centers in the U.S. once a year for a special MRI and a consultation with a thal. specialist?
   I want to mention that we live in a small state. Our son is the only thal. patient at our hospital. And yet, I know from our visit to a thal center and from talking to other parents with children with this condition that my son is getting the same level of care as he would at a major thal center!
   I am absolutely happy to talk to anyone who wants to know more about thalassemia or put you in touch with doctors who could review a file of a child with thalassemia. My personal email is nwalsh528@yahooo.com We have found thalassemia so manageable that we hope to adopt another child with thalassemia!

9. nicole1117 Says:
   March 15th, 2011 at 11:11 am

   More on Thalassemia –
   I wish I had mentioned in my previous comment that there are many different forms and severities of thalassemia. There are both alpha and beta thalassemias (neither is more severe than the other). There is alpha trait/minor/carrier and beta trait/minor/carrier which is most likely not an issue (child might be slightly anemic and this would not be helped by iron supplements; red blood cells might be slightly smaller than typical but overall a nonissue), until of childbearing years. If wanting to have biological children, they would be counseled to have genetic testing to make sure the partner does not also carry the same trait (either beta or alpha). If the partner also carried the trait, there would be a 1 in 4 chance with EVERY pregnancy of the baby having the major form of thalassemia. There is alpha intermedia and beta intermedia, in which transfusions are needed at some intervals (could be every 3 months, every 4 months, every 6 months, etc.) but not at the frequence of major. There is the beta thalassemia major/Cooley’s that my son has which I commented on previously (regular transfusions every 3-4 weeks). In almost all cases, fetuses with alpha thalassemia major do not survive a full pregnancy, so you would not see that form of thal. on the Shared List. There are also many other forms such as Constant Springs, Hemoglobin H, and others…
   My advice would be to anyone considering a child with thalassemia (even if you believe the child may have just the trait/minor form), is be prepared for a transfusion dependent form of thalassemia. If when the child gets home, they do not need transfusions, great…but in my opinion, better to be prepared and have a hematology team ready to treat your child, than to get home and be emotionally floored to learn that your child has a transfusion dependent form. (Just my opinion.) Many of the children on the Shared list with thalassemia (or Mediterranean Anemia) do have gene tests in their files. My son did. It was clear he had the major form, however, nowhere in his file was there any mention of being transfused. We assumed he was, and this was confirmed with an update closer to travel, but others have not had this confirmed until they were in China.
   Also, I want to say that you don’t have to live near some large special hospital. Any hospital with a pediatric hematology (or hem/onc) clinic/provider will do! You would just need to be able to get bloodwork and transfusions done, and have the provider prescribe the chelation medication. Again, please contact me if you have any questions! nwalsh528@yahoo.com and my RQ Id is nw030608 though I see when I just posted here on the RQ blog my ID comes up as nicole1117. I’m the same person!

10. mamatothree Says:
    March 15th, 2011 at 11:12 am

    Our daughter was adopted at 2.5 yrs of age. She had a 17mm VSD which was repaired in China at 11 months of age. Today at 5, she is an active little girl with no limitations. The repair in China was amazing and our pediatric cardiologist here is very pleased. She has almost no murmur and we only go the cardiologist every 2 yrs.

11. kedutton Says:
    March 15th, 2011 at 12:10 pm

    We came home with our daughter last June when she was 20 months. She had a diagnosis of Atrial Septal Defect (ASD). She had another echocardiagram last fall when she turned two and it showed that the hole has already closed on its own. We go back to the pediatric cardiologist in two years for a follow-up. No murmur was heard. She has never been sympomatic and is a mighty force in our home. She has been able to keep up with her two big brothers step for step. Developmentally, she is small for her age (5th percentile) on the Chinese growth charts, but the doctors feel that she is growing well. Social, fine motor, gross motor is on target or ahead. Obviously, this SN has been quite simple for us, but we went into it completely ready for anything including heart surgery.
    As far as any advice to PAP’s, I would tell you that there is no obligation to share the details of your child’s SN with people. When we got home with her, a tactless extended family member said “I thought she has some kind of heart condition or something!” Because I shared her story with people other than close relatives, I feel that I have given her another label. Not only does she carry “adopted” and any others people want to put on her, but she carries “heart condition”, and that is my fault. I wish I would have saved the details of her story for her to tell.

12. zgirl1 Says:
    March 15th, 2011 at 12:53 pm

    We adopted our son in April 2010. He was 17.5 months old, and his files said that he had a repaired VSD and club feet. He had open heart surgery in June 2009 (at 9 months of age) to fix the VSD. When we arrived home, he had a cardiology work-up and the doctor said the repair was done so well that they would not have seen it on the ultrasound if they didn’t know to look for it.

    DS’s heart is “fixed.” It functions normally, it causes no problems, and he’s on no medication. We have to go back in 3 years for a routine check-up.

    A few tidbits, though: DS was on the small side at birth, and he’s still small. This is probably partly due to the large size of the VSD and to the heart surgery itself (recover from open heart surgery can be hard on the body). He also has gross motor delays, which probably is a result of his surgery, his club feet and relatednerve damage, and institutionalization.

    Finally, DS’s open heart surgery scar looks “normal” but he has mild pigeon chesting on his right side due to the open heart surgery and how the ribs healed. It’s a relatively small bump and hopefully it will get less noticeable over time as he grows.

13. chinamomma Says:
    March 15th, 2011 at 2:25 pm

    We adopted our DD#2 at 24 months old. She was diagnosed with a VSD, PFO and PDA repaired in China at 7 months old. These are all holes in the heart that cause oxygen-rich blood to mix with blood that has traveled around the body and distributed its oxygen. We were prepared to deal with any issues that came up when we commited to adopting our DD. Fortunately her repair was very good and she was released from the cardiologist’s care with routine annual check-ups.

    However, she was not speaking words but just babbling when she joined our family. She could understand English quickly and was good at making her wishes known. After several months of developmental and speech therapy with little progress, I knew something else was wrong but no one would listen. I finally insisted she be referred to a specialist where they discovered she had a VPI (a cleft palate where the muscles do not extend over the roof of the mouth). With two congenital issues, it only took me 5 minutes on the internet to realize she probably had a VCFS (velo-cardio-facial syndrome or 22q deletion syndrome). She was diagnosed in October 2008 with this chromosone issue and has since had tests on her kidneys, hearing, immune systems, electrolytes and many others. She has had surgery to repair her cleft with good results and tubes put in for frequent ear infections. She has frequent bouts of pneumonia which we are trying to find a cause (either asthma or damage to her lungs before her heart was repaired). She also has some hearing loss in her left ear.

    Sound like a bad case scenerio? A relatively managable SN that turned into a rather scary chromosone disorder? If you could see my DD now, it would never even cross your mind. She is the toughest 4 year old I know. Her speech is understood most of the time by everybody. She is in ballet, learning her letters and numbers and will go to kindergarten on time in the fall. She is only 28 pounds fully clothed but is such a joy to our family. She has 3 older siblings and is determined that they will do nothing without her. Her famous saying at our home is, “I big, too!” when she wants to join in. There have been few attachment issues with her so far. She is so small it is so easy to cuddle and carry her when she needs extra comfort.

    Biggest concerns now include helping her gain weight, speech therapy, keeping her ears healthy, helping her learn her letters. Her syndrome does not define her, and she amazes me every day.

    To tell or not to tell: We have chose to only tell her grandparents about her health history. We feel this is her story to tell some day as it will have a big impact on her future (her biological children will have a 50% chance of having VCFS). Don’t think we are not ashamed at all. We just feel it is no one else’s business as people will probably have an opinion or judge her by a syndrome which is only a small part of her life. Also, VCFS comes with 90% chance of learning delays and a high incidence of psych issues later in life. We live one day at a time, so I don’t need anyone looking up medical information to scare my daughter with before she needs to know. So people know she needs speech therapy and that she has a history of heart problems and that’s enough for now. We have also chose not to tell others about our DD #1 who was adopted from China at 11 months as NSN and has thalassema minor. A non-issue at present but she will need genetic consuling also before having bio kids.

    You need to be prepared to advocate strongly for your child. I am on the phone frequently with schools, therapists, insurance companies and coordinating care with numerous doctors. We are fortunate that our state offers a secondary insurance for kids with certain special needs. Feel free to contact me with questions – my ID is chinamomma on the forum, too. This is the first time I have posted her whole story so please be kind if you disagree with my wording.

14. Ms. J Says:
    March 15th, 2011 at 3:09 pm

    We adopted our daughter from China at the age of 15 months. Her diagnosis was an Atrial Septal Defect (ASD), with pulmonary valve stenosis. The whole in her heart (the ASD) was 8 mm, but she was still a potential candidate for cardiac catheterization (where they thread up through the groin and slip a patch over the hole to close it), but the possibility of open heart surgery was known from the moment we had her medical records reviewed, and we chose to proceed.

    She was completely asymptomatic – meaning she was not blue, great appetite, normal height/weight, and the energy of half-dozen children combined, LOL. This was partially due to the pulmonary valve stenosis – imagine a peace-sign, with the three flaps . . . one of our daughter’s was sealed shut, thereby equalizing pressure in her heart as blood flowed.

    Upon returning to the USA, all of the medical records from China matched up exactly with tests run in USA. However, because of the location of the hole, open heart surgery was required. Docs advised us to wait until we were out of cold/flu season (she never had a cold/flu, and wasn’t in daycare though). A week prior to her 2nd birthday she had the open heart surgery. Open heart surgery involves the fracturing of the sternum (clavicle), and being on bypass machine during surgery. While repairing the hole (the ASD) the cardiac-thoracic surgeon also repaired her pulmonary valve by slicing open the flapped that was sealed shut – had he not, the ASD repair would then have made the pressure un-equal. The fluke of the pulmonary stenosis contributed (in a positive way) to making her ASD (hole in heart) be asymptomatic.

    She spent one day in the pediatric cardiac ICU (normal protocol), heavily sedated. Then another day in the step-down unit. She was eating normally by the second day.

    She was discharged 52 hours after we entered the hospital! Biggest issue, physically, was that a sternum fracture takes 6 weeks to fully heal. That means lifting carefully (from under legs/bum, not under the arms), no playground visits, jumping/climbing that could re-injure. Totally manageable, since she was at that time an only child, and not in daycare (so we could monitor more closely), and mainly around adults. She had to have shallow baths until the scar (vertical on her chest) was fully healed – I think about 4 weeks until we got okay to return to her preferred deep water baths. Took diuretic for one month after surgery to guard off fluid buildup (were able to sneak into bottle, no problem). She refused any attempts for us to give her pain meds after we got home, and seemed to manage it well. This was her choice – she had full comprehension of English and was speaking in simple sentences.

    Followup . . . one appointment (for echocardiogram and an EKG) two weeks after surgery. Then next followup was at 4 months, and another at one year post-surgical mark. She has been released to now visiting pediatric cardiologist once every two years. She has no medical, dietary, or physical restrictions. Life expectancy is normal. She is very energetic, normal height/weight, appetite. Scar has faded a great deal in 2 years since surgery (we adopted in July 2008, surgery April 2009).

    The worst part of adopting a child with this condition, for me, was “The Wait.” To know your child is scheduled to have open heart surgery, but it not to actually occur for 6 more months (in our case), was torture. Every time I put her to bed I was thinking about “what if”. Every time I put her in the bathtub I was looking at her beautiful, unblemished body, and wondering how she would feel about someday, as a grown woman, with a scar on it. Don’t pooh-pooh and say “oh, but it is life-saving” – she will still someday be a teenager and want to wear a shirt or bathing suit or shop for a wedding dress, and see that other girls have different bodies. Of course we empower her body image – but she is still going to have moments someday when she struggles with it, just as she will with being Chinese, etc, having been adopted, etc. And sometimes many of those will combine at once!

    Her condition is/was extremely manageable for us. My insurance is good, but has a high monthly premium. The heart surgery and tests were 100% covered after $1,250 deductible, and my flexible spending account covered the deductible. I feel that we were very fortunate – everything we were told and shown in medical tests matched up completely. Maybe this was because she was in a major metro area in China, and had access to better diagnostic equipment and such.

    Our biggest issue, and far outweighed the “special need” was her grief. She lived with a foster family for a year, who loved and cherished her deeply (we have a photo book, and they have begun communicating with us via letters – wow!). Our daughter grieved HUGELY (which we were ready for, but it still is tough when your nerves are frayed and a child is screaming and crying that much, every waking second). Our guide in China said that in nearly a decade of working for our agency, it was the most extreme case of grief she had ever seen. We took it as a sign of how loved and secure she was, and made it the ideal and remain THANKFUL that she was cared for as such. I’d rather have that upfront than a latent issue that surfaces later. With deep adherence to attachment techniques, we slowly worked through it with her, and limited contact with her to just us for several months. One grandparent was allowed to begin to interact at a time (her other caretaker) so as not to overwhelm her, and cement her attachment and trust in us as parents. It worked. It was hard. So much more than her heart issue. But the grief/attachment could and can happen with any child who was adopted. PLEASE ADHERE TO ATTACHMENT TECHNIQUES, REGARDLESS OF WHETHER SPECIAL NEEDS OR NSN!!!!

    My advice . . . you must prepare yourself for things being both better and worse when you adopt a child, internationally, with a heart condition. Ours was exactly what we anticipated, which probably doesn’t happen all the time. It was not a big deal for us, having family in the medical community who understood the frequency of congenital heart defects in children, but we respect that it is/was “life-threatening” and not appropriate for all families. Consider your insurance, lifestyle, and so on, for any “Special Need.” My insurance would not be good for a CP/CL situation, which may have ongoing doctor visits, surgeries, and speech therapy – but CP/CL isn’t life-threatening, so that may appeal to other families whereas a “heart baby” is too much to handle.

    Don’t romanticize your child’s condition, and don’t make it open public knowledge. Your child’s medical condition is their private life – not everybody “has to know.” We are proud of our daughter for many reasons, but her medical history, just like the more intimate details of her adoption, are on a need-to-know basis.

15. willowflower Says:
    March 15th, 2011 at 3:28 pm

    We adopted our daughter at 21 months old. She has a 9mm VSD and a 4.2mm ASD. She was scheduled for open-heart surgery in China because of the size of the VSD (and it hadn’t gotten smaller over time) but the cardiologists here felt that we should wait because the VSD is restrictive (has some tissue covering the hole, so in essence behaves like a smaller hole, and clinically she was/is doing perfectly fine..developmentally very on track with an excellent growth curve, good nutrition, etc.). We asked that they hold off on surgery in China until we could get her home and evaluated and they agreed. She saw the cardiologist in August ’10, a few weeks after arriving home, and they want us to bring her back again in the fall when she turns 3 years old. So far so good. She is very healthy and strong and doing beautifully. Her murmur is very loud so that hasn’t changed. Hopefully she won’t need any surgical intervention but we don’t know that yet for sure. We are watching and waiting. If she does need surgical intervention, it will be open-heart surgery.

16. babslb Says:
    March 15th, 2011 at 4:07 pm

    Our daughter was adopted at age 2 in 2007 she is now 6. She had Tetralogy of Fallot (TOF). Which means she had a VSD, enlarge right ventricle, overiding aorta, narrowing of pulmonary valve. She had surgery done at 9 months in China through China Care. She has a very leaky valve that will need to be replaced around age 10-12 years old. Statistically 20% of people with TOF also have Velocardiofacial syndrome (aka Digeorge, 22qdeletion syndrome). This is a genetic syndrome that is very very variable in how it affects individuals. Our medical facility does mandatory testing for VCFS on all TOF babies. Once home our cardiologist recommended testing. We were really shocked when her test came back positive. This syndrome can affect almost any bodily system – Kidneys, immune, hearing, vision, cleft palate, VPI, scoliosis, thyroid, groweth, seizures ect. Like Chinamomma’s daughter our daughter also had VPI (velopharngeal insuffiency). Cleft children can also have this conditioin. Our daughter did NOT have a cleft. She also had hearing loss due to ruptured eardrums from untreated ear infections. She tested ok on a routine hearing test done at age 2 but a year later tested to have moderate hearing loss. She was fitted with hearing aids at age 3. They were $4000 and no insurance coverage. Only about 17 states have insurance mandated coverage for hearing aids othewise almost no companies offer coverage for aids. She will have surgery to repair her eardrums around age 7 and this should restore her hearing. To me hearing aids initially felt like a big deal but don’t anymore. Her heart is monitored once a year. She did have VPI and had surgery for that at age 3. Hearing aids and the surgery helped her speech alot. She was basically unintelligable for her first 2 years home. It amazes me today that her speech is now so clear and good. I never thought I would be able to say that. Our daughter was also diagnosed with scoliosis. Currently she wears a back brace at night and has for the past year. I think in the end this will be the most significant need – years of bracing, future surgery. I hate the thought of her having to wear it to school. It is very noticable under clothing and limits movement. But thank goodness right now her curve is stable and only requires night time bracing. It is a mouthful but I agree with chinamomma you would never know my daughter has a genetic synrome. You would notice the obvious – hearing aids but otherwise she is socially active, plays soccer, attends a private preschool, has many friends. With this syndrome there is a high incidence of learning disabilites, lower IQ’s, and psychological problems. We justed completed a full psychosocial testing/IQ, ect on our daugher and she has a normal IQ with some learning issues. I would be lying if I didn’t say initially I was terrified of her genetic syndrome – 4 years ago I would not of chosen this as my path. China did not hide this syndrome – they didn’t have the testing and clinical skill to know. I am glad this path found our family. She is the most tender kind hearted child. She loves to learn and she if is awfully darn cute! I only tell people on an as need to know basis. Like Chinamom I agree it is her story to share but I want to at least post here to encourage and inform others.

17. stitchwitch Says:
    March 15th, 2011 at 4:30 pm

    We adopted DS at age 15 months in 2008. He had VSD, and we found out once we got home that he actually had VSD and a vascular ring. The cardiologist was much more concerned about the vascular ring as it occurs around the trachea and esophagus which can restrict breathing and eating. DS did not present any symptoms of problems with the ring, but due to his low weight the cardiologist was very concerned. We had been told that catheter surgery might be an option for the VSD, but found out once home that open heart surgery would be necessary due to the location of the VSD. The cardiologist suggested waiting until he gained weight to do the surgery, as DS was also handling the VSD well. We visited the cardiologist every 3 months and after the first visit back the cardiologist agreed that the vascular ring likely wasn’t causing any issues since DS gained so much weight once he got home. The hospital staff were actually amazed by his growth, so I’d guess they were not used to seeing children who had once been institutionalized. Finally in the spring of 2009 the cardiologist determined that because DS’s heart was now becoming too big, it was best not put off the surgery any longer. DS has open heart surgery that summer.
    The open heart surgery was absolutely the most terrifying thing I have ever faced. The surgeon was able to repair the VSD and sever the vasular ring during the same surgery. DS did have some complications in recovery when he was bleeding too much. His first night in intesive care was very hard. Thankfully with some clotting drugs and a transfusion the doctors were able to get his bleeding under control, and he was moved from intesive care to the regular ward in 2 days. Pain management was difficult with our son, because he has difficulty swallowing liquid medicine. He had to take pain medicine and diuretics. At age 2 1/2 there is no reasoning with a toddler, and after the first few doses he refused to swallow any more, and even started refusing to drink liquids. Finally, after several nurses tried, it was determined that the only way to get the medicine down him was for the nurse to hold him down while I squirted the medicine down his throat drip by drip from a syringe (with no needle of course). It was traumatic for me and for him, and even to this day almost two years later DS will not swallow liquid medication. DS spent 5 days in the regular hospital, then was able to go home.
    The surgery was hard, but once we got past it this SN has required very little. DS had a 3 month, 6 month, and 1 year follow up after surgery, and then when we went last time we were told he only has to go back every 2 years now. Before he had surgery DS did get sick a lot. He required frequent treatments with a nebulizer. However, once he had surgery his health has been amazing. He rarely gets sick, and when he does he gets over it much more quickly than he did before. He is small for his age. He was in the 3rd percentile when we brought him home, and he stayed there until recently when he jumped up to the 6th percentile this year. He has no restrictions, and other than the scar on his chest you would never know that he had a SN.
    I can definitely say bonding and attachment issues were much harder for us than his heart issues. He was severely institutionalized. He was under weight and had major sleeping issues. He did not like to be touched and would not make eye contact. By far the sleeping issues were the hardest for us, as I don’t think any of us had a full nights sleep until he had been home for about 6-7 months. Things were substantially better by the time we made that 6 month mark, and I’d say things have been getting better every day. Even today, 3 years later, I can confidently say his attachment is still growing. He now is a happy and active child, who leaps into my arms and gives big hugs and kisses. He is a joy, and I am so lucky to be his mom.

18. hopingfor08 Says:
    March 15th, 2011 at 5:20 pm

    WE have adopted three children from China and all of them have CHD (congenital heart disease).

    Our oldest son was adopted this past summer at 10 years old. Though he was listed with an unrepaired PDA, we found out while awaiting our LOA that he had emergency surgery in China. Normally a PDA is minor but he developed an infection around his heart. Thankfully the surgery was successful, done well and he is healthy as can be. He has no restrictions and is set to see the cardiologist again in 2 years.

    Our youngest son was adopted this past summer (same trip, two at once, same province) at age 5. He also has cl/cp which I spoke of in yesterday’s blog. This by far is a greater need to us on a day-to-day basis. DS was born with Tetralogy of Falot. We just had a cardiology visit today and he was released to annual follow-ups. :) He will need a valve replacement and does have a surgical complication, but the drs. are following it. His surgery was done at 2 years old in China, but the complication is one that can happen here in the US as well. Our cardiologist feels his surgery was well-done and it certainly changed his life as we have photos of him before and after.

    He is very energetic, has no restrictions at this time, and we have been told to follow his lead (which keeps us hopping until he falls asleep at night :). At this time, he does not play organized sports, but he loves to throw and catch balls and jump on the trampoline, play Wii bowling, etc. He is developmentally delayed and that is a far greater concern at this time. We don’t know the extent or how far he’ll go, but he is catching up daily. He lived in a very poor (but loving from what we can tell) SWI for 5 years so we expected some DD. There may be underlying conditions as well.

    We are well aware (and were from research prior to adoption) that CHD coupled with Cl/CP can mean there is a genetic component. On that note, I highly recommend hospital websites (of large Children’s hospitals) for research, the American Heart Association and even the American Academy of Pediatrics). Also the ChinaHeart yahoo group is a wonderful resource and support and is open to those parenting and those considering the adoption of children born with CHDs.

    Our DD, 5 and adopted in 2008, was born with transposition of the great arteries (aka vessels in some paperwork; same thing) along with 3 LARGE VSDs (which essentially left her with a single ventricle). B/c of her not getting any surgical intervention in China, the only surgical option for her was the fontan procedure. I won’t repeat what PetnJay has already shared as she outlined the specifics of this well.

    I will say our DD came home very ill with oxygen saturation levels in the 40s/50s, but was quite active and alert even still. She had OHS 8 days after we arrived home receiving a fenestrated fontan (with no Glenn surgery before) and came home 8 DAYS later. She definitely surprised us all, but she has never looked back. A year later, she did have another procedure via cath to close her fenestration as her drs. felt for her particular situation it needed to either close on its own (which they hoped it would but it didn’t). Now that her fenestration is closed, DD’s oxygen sat. levels are consistently 90 or better which for her is a GREAT place.

    DD takes ballet (her choice for her on activity) and is thinking of switching to taekwondo (which her three older brothers take). Her cardiologist said taekwondo will be fine with protective gear and/or modifications occasionally. DD does have sports restrictions regarding soccer (no protection for chest), but could do it at a later date if she really wanted when older and can understand the risks. DD also has plenty of energy, jumps on the trampoline, is swimming and has been for a while w/out flotation device and is sounding out words.

    At this time, DD has no more surgical interventions scheduled as there really are not anymore for her. She would not be a candidate for a heart/lung transplant b/c of her other birth defects. She was also born with cl/cp. As I shared yesterday, this need is much more *major* in terms of affecting DD’s day-to-day life mainly in speech/communication delays. She does have expressive and some language delay as well which we are monitoring closely.

    DD takes 3 pills a day, two at night and 1 in the morning. I hand them to her and she swallows them whole without complaint. She is just used to it. We travel anywhere we wish by car but DD is restricted for airplane travel such as a trip back to China. When she is older, again we’ll let her help in making the decision of the risk versus the gain of doing this. But for now, she is only 5 and content in this.

    DD will never be healthy or rather her heart will not be. We understand this and I think she does too. But don’t let this make you think she is not a typical little girl who loves to dance and play in the dirt too! She is dainty and rough and tumble all rolled into one. She is very bright and will tell anyone that the world is hers to explore. We are so grateful to have her as our daughter and do not look far ahead but instead choose to cherish the present.

    We would adopt another heart child in a heartbeat no pun intended. But for now, our two sons home just 8 months and their siblings need time to adjust to being a family of 7 instead of 5. I will say for DD the huge struggle has been in attachment. DD does have PTSD due to extended hospital stays during her first three years in China (and possibly due to other things we’ll never know about but we know and have photos of her hospital stays). DD’s attachment to us has been a dance for sure and continues today. We have to work at it, all of us. The boys have really attached and bonded beautifully thus far and are continually moving forward, but for DD it is a back and forth. I think a lot has to do with temperament as little DS spent much time in the hospital too but has total trust in us during hospital stays.

    Well I could write a book so I’ll stop now. Please email me at cljjs (at) yahoo (dot) com if I can help in any way. I am also happy to share my blog with you via email.

19. 3peas1pod Says:
    March 15th, 2011 at 5:35 pm

    My daughter was adopted at 18 months. Her file indicated that she had a 16mm X 10mm VSD, a PFO (There is a flap in your heart that closes on its own when you begin to breathe with lungs. PFO is when the flap does not close and seal off like it should. AS a result, the “good” and “bad” blood mix together.) She also was sad to pulmonary hypertension as well as pneumonia. At 3 months old, she received surgery in China for the VSD and PFO. When we returned home, the pediatric cardiologist said it was an excellent repair job and she is perfectly healthy. They never found any trace of anything related to the pulmonary hypertension. She has no restrictions. We just go for a check up once a year for good measure. She is now almost 4 and is a very healthy, well adjusted little girl.

20. jmsmommy98 Says:
    March 15th, 2011 at 5:48 pm

    Both of my daughters were adopted with CHD.

    My oldest was adopted at age 16 months with the paperwork saying she had PDA, PFO, and tricuspid valve leak. Actually, the paperwork stated she had a hole in the aorta which the cardiologist took to mean PDA. ;) In her updated paperwork we were told the PFO had closed and the PDA was larger, and no mention of the tricuspid valve leak. As a PDA is not supposed to grow, the cardiologist thought that perhaps it was a translation error, but to be prepared for anything. We got her home, and her PDA had all but closed on it’s own. It had to have been a translation error after all.

    She actually has other needs, not disclosed, like Asthma, reflux, etc. that combined with what we do know, we suspect she was actually a premature baby. All minor complications that can arise out of that are appearing. None are terribly concerning to us as they are all things we deal with in our sons as well.

    She also has some fairly major attachment issues, and anxiety over being left. This is by far our biggest worry and concerns as far as her care at this time. Her heart condition proved to be a non-issue.

    Our 2nd daughter, who is 3 now and adopted last June (at age 2.5), was diagnosed with a PDA of 4-5mm. However, in her paperwork it mentioned having cyanosis around her mouth. A PDA of 4-5mm would NOT have caused that, so once again our cardiologist cautioned us to be prepared for anything. We were warned of pulmonary hypertension as an unrepaired PDA can cause this and coupled with the cyanosis no one knew for certain what we were dealing with. By the way, her PDA was not listed as a PDA in her paperwork either, it was something like “defect in aorta” or “opening from aorta to pulmonary vein.”

    She ended up having a 4-5mm PDA that was VERY short, an enlarged left ventricle, and mitral valve leak and the mitral valve looks like it may prolapse in the future. She had a heart cath procedure done in August, and we were told by the cardiologist that they were barely able to do it via cath. That because her PDA was so short, that it was iffy on whether or not the cath procedure would work. If it had not, the laproscopic surgery was going to be out due to the location of the PDA and how short it was, so open heart surgery may have been needed. Luckily, the cath procedure worked. Leaving us with a leaky mitral valve that will likely prolapse in the future and need a valve replacement.

    The doctors also found that she has “weird blood” and I have to warn all the doctors that she is NOT anemic, but it will look like she is. Yes, a form of thalassemia. She just has the trait form of it, which means we warn the doctors she has it and when she gets married she will need genetic counseling before having children of her own.

    The only thing that we deal with about our 2nd daughter, other than yearly heart exams with the cardiologist to keep an eye on the mitral valve, is needing to remember antibiotic for dental work, and she’s needed quite a bit of dental work!

21. strawberryshortcake Says:
    March 15th, 2011 at 6:28 pm

    Peanut came to us as an NSN child. 2 years later, she just wasn’t kicking an illness and we ended up in the ER. She is usually an unusually healthy child…the DR thought something looked slightly amiss and brought up the term “Thalessemia” with me, which floored me, as Nicole was on the boards adopting her son about that time.

    Peanut was diagnosed with Beta-Thal Minor. She has a blood count that rivals what most of us have when our systems suppress due to a big illness…about 85% of “normal”.

    Alpha or Beta indicates WHICH chain is affected by the chromosomal anomaly. Then there is Major, Intermedae (both get transfusions), Minor, Trait.

    Iron doesn’t help her. She has no day-to-day issues. We do have to watch if she got a gawd-awful infection such as a staph infection, MRSA etc.

    Interesting fact is that people who have Thal are very resistant to Malaria. Hence, it’s endemic to areas of the world with lots of Malaria, as it’s a benefit in it’s minor form…South East Asia, Greece and other parts of the Med.

    Our biggest concern is that when she decides to have children, she would have to have genetic testing, as many many people carry Thal Minor and don’t know it. Two carriers or Minors can create a transfusion dependent child.

    The biggest “fear” of this SN is that you really don’t know FOR SURE if the child is transfusion dependent or not…as people have said, it rarely happens, but it does, that transfusions are left out of the file. Not often, but you have to be prepared for that as a worst case.

22. blaggiesworld Says:
    March 15th, 2011 at 7:25 pm

    In 2007, we adopted our son at 21 months old, VSD. There was nothing in his paperwork that showed the VSD had been repaired. We asked repeatedly for updates on his condition and never received any. So we were emotionally prepared for the worst case scenario which would have been open heart surgery as soon as we got home and possible permanent heart damage from pulmonary hypertension.

    The first day in China when he was handed to us we asked how his heart was and they just said, “fine, fine”. When we took him back to our hotel room and was dressing him for bed, we were shocked to see an obvious scar from open heart surgery that was not a new scar. We asked our guide to find out. For some reason, the orphanage director didn’t want to give us any information but said it was all in our paperwork, which it wasn’t. Finally on the last day we were in the Province, our guide got us the information of when he had the VSD repair surgery. It was done when he was 11 months old, and before we had even gotten his paperwork!

    We had him checked out thoroughly by a pediatric cardiologist when we got home with annual follow ups until he’s six years old. The doctor said that the surgery he had in China was a success and done in time before any permanent damage occurred. He is five now and very active with no physical restrictions whatsoever.

    You just never know. In our case, we expected the worst and ended up with a surprise best outcome. It just so happened that today my son had day surgery to have a tube put in one ear and his adenoids removed. The anesthesiologist was really interested in how old he was when he had his VSD repaired in China. When we told him at 11 months, he was happy to hear that because he said he went over with a team to China in 1983 to show them how to repair a VSD in an infant. He said before that in China, they would wait until a child was five years old before doing the surgery which was often too late.

    And even though my son had minor surgery today, he’s doing well and did not require any special treatment because of his heart.

23. ldw4mlo Says:
    March 15th, 2011 at 8:07 pm

    To add, thal minor children, sometimes take a while to present with visible symptoms, if ever. The body tends to adjust to things like this.

    So a crisis of sorts can trigger an episode or some other issue happens and it is discovered.

24. bailey Says:
    March 15th, 2011 at 9:23 pm

    In 2008 we adopted our son. He was just over 4 years old and his SN was listed as post operative CHD. At about 1 year of age he had repair of ventricular septal defect and tricuspid valvuloplasty. His paperwork indicated that the surgery was a success.

    Our son has had two visits to the cardiologist and they determined that his heart repair was good and he they did not need to see him for three years. The hardest part was probably waiting for the cardiologist visit. I just wanted to know. After our first appointment, they actually didn’t need to see him the second time but I wanted to return to see a different cardiologist because the first one didn’t write an accurate report. He indicated that his incision was properly healed which was not the case. They lost my trust but I gave this medical center a second chance with another cardiologist otherwise I was heading to a hospital a distance away. We were quite satisfied with the second cardiologist.

    When we met him in China we immediately noticed an issue with the healing of the incision on his chest. There was a very small area that wasn’t properly healed and had a watery discharge. When we arrived in Guangzhou and met with the doctor who traveled with our group he indicated that he thought it was probably the stainless steel wire used to close his septum protruding. It wasn’t infected and we would be fine until we returned home. It was exactly as expected. The wire appeared to be sticking out through his skin. He was scheduled for out patient plastic surgery which was very quick and successful. The doctor regretted not fixing the appearance of his scar while doing the procedure. He admitted that he should have thought of it and taken care of it at the time. Now it is likely we will have to do this some time later.

    So for us, his CHD is a non-issue. He is a happy, healthy, active, and joyful child. His adjustment was not difficult but we were prepared for issues and he did experience a period of grieving. Also, I have talked to others who adopted children whose surgery in China was not fully success so “post-operative” does not always mean “fixed.” It is wise to be prepared for the possibility of heart surgery.

    We are now waiting for our second child who has Thalassemia minor/trait. It was listed as Mediterranean Anemia on his file. The genetic test listed is in his file and indicates trait as confirmed by two doctor reviews. We hope this is the case but if we find that treatment is necessary we know he can be treated at the hospital 30 minutes away, which is also 5 minute from my office. We are also only 2 hours from one of the 9 treatment centers (and we have family that lives minutes away). So if necessary, we know he can get the care he needs. Additionally, a wealth of information has been offered on Thalassemia in the forum.

    Good luck to those of you considering these special needs. Don’t hesitate to check out the forum or the various yahoo groups for the SN. People are very helpful and honest about the reality of their particular situations.

25. missmaria Says:
    March 15th, 2011 at 10:46 pm

    We adopted our then 28 month old DD this past July. She just turned 3 a week ago. She is a post op TOF. She was also born with an extra thumb that she had surgery to remove since being home. She is doing well. The cardiologist said that her repair was done well. Her valves on the right side of her heart are leaking and her aortic root in enlarged. She will eventually have to have a valve replacement surgery. Luckily, the children hospital that we use started doing valve replacements via a cath last month. She does take medicine each evening in slow done the enlarging of the root. At this point, she does not have any restrictions. She is full of energy and life. She is a sweet, smart, and very strong willed child. Her attachment is going wonderfully. Certainly, it is a process, but things are going well. Sleeping and night terror were a huge issue for us at the beginning, but now she is sleeping in toddler bed or with us all through the night. I can’t even remember the last time she had a night terror. Our DD lived with a foster family the entire time which I believe has made our attachment easier however, she grieved for her foster family so much in China and when we got home. The biggest challenge with our DD is her speech and her behavior. She gets frustrated when she cannot communicate her wants and needs with us. She is receiving private speech therapy weekly and making great strides. DD is very strong willed and can be a challenge. Her foster parents were older and treated her much like a grandparent would. I think she ruled the house. I believe she was well cared for and loved by them.
    We did take our DD to genetic doctor because of her two birth defect and the doctor does not believe that she has a genetic syndrome.
    DD is a joy and we love her so much. Her SN day to day is an non-issues, however, she is extremely afraid of doctors and is completely non-cooperative when we go to the doctor. She has to be sedated for any testing she gets done. She fights, cry, and screams until she is sick. It is heartbreaking to watch. I am my DD’s advocate and if you adopt a child, SN or not, I believe you have to be prepared to be their advocate.
    Would we adopt another heart baby? Absolutely!

26. southslopemama Says:
    March 16th, 2011 at 1:15 pm

    Thal trait–most minor form of thalassemia–from an adult perspective–my DH has this. He is half Greek, one of the groups of people most affected by thalassemia–”Mediterranean Anemia.” StrawberryShortCake went into the (I think) fascinating malaria component–it’s amazing how the human body tries to adapt itself. Anyway, several of DH’s family members on his mom’s side also have thal trait. It’s been basically a non-issue for DH. He does not have as much energy as others might all the time. His red blood cells show up looking funny when he has labwork done for things like, oh, an adoption physical. When we were already pregnant with our DS, we went for genetic counseling and I did have an amnio. I think genetic counseling before getting pregnant is a great idea. I was not too worried since I am Northern European and not in one of the “at-risk” groups. But, if I knew then what I know now…I might have gone for genetic counseling before trying to get pregnant. DS is fine.

    So, at its mildest form, thalassemia can be so easy and manageable! I would def adopt a child with thal trait. If I could easily take a day off every month I’d adopt a child with a more severe form of it, too (like Nicole’s sweet Aaron, above).

    Steph

27. southslopemama Says:
    March 16th, 2011 at 1:17 pm

    Oh, meant to add–my forum name is the same, southslopemama. Any questions on an adult living with thal trait and I will happily ask DH.:-)

    Steph

28. blaggiesworld Says:
    March 16th, 2011 at 5:07 pm

    I commented yesterday about our DS who was SN (VSD) adopted from China, but didn’t mention my NSN DD also from China who has Thalassemia minor. We got her at 9 months old in 2005. We had our doctor do all the usual IA lab work on her when we brought her home and it all came back fine except she had anemia. Dr just figured it was from low iron. We gave her iron drops for over a year, no improvement.

    Finally they tested further and said she had thalassemia minor, which we had never heard of before. She’s from Guangxi Province and from what I’ve read, it’s a common genetic trait there. She’s 6 now and very active. It doesn’t seem to be slowing her down. I have read on some Thalassemia sites, though, that even with the minor form some people have problems like easily fatigued.

    Slightly off topic, we adopted US domestic a NSN baby girl who is of African American descent. She tested positive for Sickle Cell anemia trait. She’s two now and also just fine and very active. I think the main concern we have with both our daughters is that they get genetic counseling when they plan to have children and to be aware of the condition because during a health crisis it can create additional problems. Ironically both Sickle Cell and Thalassemia help protect the people with these traits from Malaria.

29. hopingandwaiting Says:
    March 17th, 2011 at 7:41 pm

    our daughter was adopted at three..CHD (ASD/VSD..PHT)…the repair was done when she was two…the doctor here said everything looked okay…her pulm. hypertension is a little high, so we will watch it…come back in a year.

    Sure the scar isn’t a great one (the doctor here said so)..but, we call it her honour scar!

    She is active, funny…a little delayed, which we are working on…we have been home six months.

30. lillysmom07 Says:
    March 29th, 2011 at 7:19 pm

    We adopted our second daughter at 54 months of age with a diagnosis of TOF and Bloch Seimans syndrome. This combination is supposedly rare (only found in 5% of the entire world population according to medical info.). She was abandoned around the age of three and had surgery for the TOF 6 months later. If you are interested in the Bloch Seimans Syndrome I will post it under whatever section “skin issues” falls into. When we met her she was slim, but not scrawny which I was afraid might be the case despite pictures. She was very active and did not have any episodes of anything other than normal shortness of breath with a lot of exertion. She has never had a problem with being “blue” and her oxygen sats are always 98% and higher. Her cardiologist is not totally sure that the diagnosis of TOF was totally correct as he did not see the normal issues with the arteries and enlargement of the ventricle or ventricles. He said that she can do anything that she wants to do including sports. His prognosis was that there is a less than 10% chance that she will ever have any problem with her heart based on her CHD in her lifetime. What an incredible blessing!!! This, I think, was a pretty uncommon outcome with this diagnosis but I wanted to include it so that folks can see both sides of the coing, so to speak.
    She is a generally happy, silly girl who adores her “big sis” who is two months older than her. She is a gift!